Frequently asked questions

Here is a list of frequently asked questions (FAQs) regarding the Cheshire and Merseyside Secure Data Environment.

What is the Cheshire and Merseyside Secure Data Environment?

The Cheshire and Merseyside Secure Data Environment (SDE) is an online platform that securely brings together health and care information from across Cheshire and Merseyside. It will be used by health, care and research professionals to plan health and care services, carry out research, and make sure that patients receive the best possible care. 

What health and care data is included?

The Cheshire and Merseyside SDE brings together information from several important areas of health and care within Cheshire and Merseyside, including: 

  • GP practices 

  • Community services 

  • Mental health services 

  • Social care 

  • Hospital services 

  • Ambulance services. 

The data includes: 

  • Details of health conditions. 

  • Any medications you may be taking. 

  • Any allergies you may have. 

  • Recent test results. 

  • Vaccinations. 

  • Care or treatment plans. 

  • Details of any social care or carer support you may receive. 

For more information please visit our Data use webpage.

How is patient confidentiality protected?

The Cheshire and Merseyside SDE uses the strongest possible levels of privacy and security. It protects your data by following the Five Safes framework.  

The Five Safes are: 

  • Safe data: The NHS only allows researchers to access de-identified versions of your data. This means researchers never see your personal information, such as your name, date of birth, address, or NHS number. 

  • Safe projects: Researchers are only given access if their research projects can deliver benefits for the public. The Cheshire and Merseyside SDE is about using data for the greater good. 

  • Safe people: All researchers must be trained and authorised to use data safely before they can access the SDE. 

  • Safe settings: The SDE acts like a “digital laboratory”, with the highest possible levels of cyber security. Approved researchers can use it to analyse data.  

  • Safe outputs: Research findings must be checked and approved by the NHS before they are published. 

Who will access the SDE?

The Cheshire and Merseyside SDE will be used by health, care, and research professionals. Only approved researchers with approved projects will be given access to analyse data. At all times the NHS controls: 

  • who can access the data

  • what data the users can access

  • what users can do with the data. 

How does it work?

When you see a health professional, for example in a hospital or GP practice, data about your care is recorded on systems called ‘care records’. The Secure Data Environment (SDE) can make some of this data available to support health and care research.

Only de-identified patient data, with personal information such as names, addresses and dates of birth removed, is made available in secure ‘workspaces’ for researchers to access. Researchers must apply and be approved for access before they can work with any data on the SDE. This is decided by a Data Access Committee, which is hosted by NHS Cheshire and Merseyside.

Only data which is needed for their specific project is made available. Data cannot be removed from the platform and is never sent anywhere outside of the NHS. The Data Access Committee comprises members representing the NHS and members of the public. 

Why is the NHS doing this?

The Cheshire and Merseyside SDE will help to unlock the power of health and care data. It will help us to research new treatments and therapies faster than ever before. It can also help with planning local health services. It can improve care for everyone. It can even help save lives. 

What is the legal basis for using patient data on the SDE?

The Cheshire and Merseyside SDE has approval from the Confidentiality Advisory Group (CAG) and Research Ethics Committee (REC) to process patient information for research. CAG and REC are independent bodies that provide expert advice on the use of confidential patient information.  

CAG and REC assess the technical elements of the data processing to ensure that it is secure. CAG also assesses the patient and public engagement and communication to ensure that NHS organisations using health data have consulted with the public on the use of that data. CAG’s key aim is to protect and promote the interests of patients and the public, while at the same time facilitating appropriate use of confidential patient information for purposes beyond direct patient care.  

CAG and REC reference numbers: 

  • CAG Reference: 23/CAG/0033 

  • REC Reference: 24/EE/0035 

Anyone who doesn’t want their information to be used for research and planning can opt out.  

What do I need to do?

You do not need to do anything if you want your health and care information to support research and planning through the Cheshire and Merseyside SDE. 

What can I do if I don’t want my data to be used?

You can decide how your data is shared. You can allow your data to be used for all, some or no research and planning purposes. For more information or to opt out visit the Cheshire and Merseyside Secure Data Environment webpage.

If you opt out, your data will not be included in the Cheshire and Merseyside SDE. This means it will not be included in research that is being carried out using the SDE. If enough people opt out, the quality of research outputs and health and care planning will be negatively impacted. Anyone who has opted out can opt back in at any time.  

How is it being funded?

The national Data for Research and Development programme is investing up to £200m in data infrastructure to establish the NHS Research Secure Data Environment Network in England.

The aim is that, by March 2025, there will be a world-leading, NHS-wide health data research infrastructure that enhances patient care, sustains the NHS, supports innovation, and is understood and well supported by the public.

More information on the National Programme can be found on the NHS England Transformation Directorate's website. 

What technology is used to store data and provide access for research?

Data is stored using Microsoft Azure Cloud technology. Access to the data is controlled through Microsoft Azure's Trusted Research Environment, which ensures secure and controlled access from a technical perspective. All platforms are fully compliant with security and information governance standards for managing data within the NHS.  

What is the difference between the NHS Federated Data Platform (FDP) and SDEs?

The Federated Data Platform (FDP) and the SDE network are both NHS initiatives to make better use of data. SDEs are digital platforms providing access to de-identified health and care data for research and planning. The FDP is for the NHS, or those commissioned by them, to access data for products that support direct care and population health planning purposes. The FDP products will not be used by researchers for external research purposes. Find out more about the FDP. 

How can I find out more about the national Secure Data Environment programme?

You can find further information about the national programme on the NHS England website.  

What public engagement is being undertaken to gather feedback?

A programme of patient and public involvement and engagement is being carried out to ensure that the perspectives and experiences of patients and the public are integrated into decision-making processes, and that patients can learn about, discuss, and impact health data usage in Cheshire and Merseyside.

This includes focus groups and other engagement events with members of the public. Additionally, the Data into Action programme has established a Patient and Public Advisory Group, which will ensure that the views and experiences of patients and the public are listened to and taken on board. Find out more about our engagement work. 

How can I get involved?

You can find out about current and future engagement opportunities on the Data into Action website. 

How are you informing the public about how their data is being used?

All research projects that have been approved for the SDE will be outlined via our data sharing register. Anyone can view this at any time to see what projects are using the SDE. 

A public awareness campaign will be carried out in 2025 to raise awareness of the SDE, how it works, what the benefits are, and how people can opt out if they wish to. A wide range of materials have been produced to explain what data is used on the SDE and how it works. These include posters, an easy read document, videos, website materials, and an animation for screens in GP waiting rooms.  

Ongoing engagement is also a key part of this programme. Targeted focus groups and other engagement events have been held to gather in-depth views from local people to shape this work. Further engagement events will take place in 2025, and the Data into Action Patient and Public Advisory Group (PPAG) will continue to ensure that the views of the public are taken on board as the programme develops. There is more information on the Get involved webpage.  

If you cannot find an answer to your query above please contact us.